Stephen Hinkle wrote to me saying “I am writing a book about the social challenges of having autism. I was curious if I could interview you about your hidden curriculum experience”. It became a very interesting interview. Here’s how it went.

STEPHEN HINKLE:
For One I was curious about when you were younger, did you ever go into any social or extracurricular environments and not know what to do there? Did you wonder where the other kids knew what to do and you did not and where they learned?

DONNA WILLIAMS:
It was my experience that my mother was afraid of disability. I felt she converted that fear into embarrassment, shame and disgust. So she was determined to normalise me and to have mainstream environments accept me. She tried to get me into ballet at age 3, a great idea from a brain gym perspective. I turned one eye in, clenched my fists, froze when the teacher tried to touch me and spat repeatedly with a spitting tic whilst making noises. He told her I was not ready for such a class. She was deeply humiliated and ashamed. That was my level of ability to handle extracurricular environments at age 3.

I was back in a ballet class at age 5, this time the teacher ‘got it’. He gave me hot apple juice and aeroplane spins, gave me a lot of free expression space and time, and all the kids were in a line at the bar, not all lined up row on row, so visually this worked for me, and once I got the routine I learned it by rote. My mother was militant as my trainer and I was harmed if I got anything wrong. I ultimately became ‘perfect’ at the skills. I see it as akin to ABA, but it was physical, musical, rote, and not in English (ballet is in French and very little language). In that sense it was an important thing for me, great brain gym and trained me to be around others, see myself as a peer. I did try and play with one of the other kids, mostly noises and playing with her hair and repeating things she said (buzzing). My play with others was very sensory. As for ‘know what to do there’, at that point I still was ‘just myself’… there was no sense of ‘what to do’.

When I was 5, 6, 7, 8 I got charitably invited to the parties of a girl in my class (same class for age 5, 6, 7, and only 6 kids my age. At her party I could see they had games, but other than pass the parcel (which they helped me with) I didn’t understand the games, so I flicked light switches and went to the kitchen to be alone with the girl’s mother (adult instead of all those kids!).

I began to understand speech from 9-11 and at 9 I noticed kids were ‘passing meaning’ and I thought they were clearly more clever than me, because I couldn’t visually/verbally keep up. As for the social side, that really hit at 12 and I was traumatised… I realised people were ‘acting’… they were not ‘being’, they were performing, putting on fronts to win points, impress each other, gain power, and it was so foreign, and it sickened me, it hurt my head, broke my heart, I felt I was a freak, broken, an alien. I didn’t cope because I was crap at being anything other than me.

STEPHEN HINKLE:
Did you take anything such as idioms, jokes, and most sayings literal and not realize exceptions to rules easily?
as in meaning what they would mean in a dictionary face value?

DONNA WILLIAMS:
The jokes, idioms thing was in my 30s because until then I was completely literal… I was 90% meaning deaf until age 9-11, then 50% until age 32, then 30% since then… so its a different world for me… only F*&$wits mess with my head with jokes… they know its like poking at a blind kid… so I don’t hang out with arseholes. But, yes, I was always the butt of jokes and people also used so much of my attempts to understand AS their jokes, and I was told ‘you are such a joke’ and it taught me much about their insecurities and made me more spiritual, I know who I am, AND I know who I am not. I LOVE humor, and love silliness, but I still don’t get most jokes. I do make jokes and people often actually think I’m funny, but mostly I do characterizations, even satirical ones. As for idioms, I studied them, rote learned them like a foreign language, watch out for them, I’m not that daunted by them.

STEPHEN HINKLE:
What I mean by “face value” is for example, taking a common slang phrase like “what’s up” and answering “the ceiling” or “the sky” instead of “what’s new in your life today”. When I was in school, I was told “don’t talk to strangers”. I thought he other kids were strangers, as my family did not introduce them to me or approve of me talking to them. Did you experience or can relate to this. I didn’t know that I was even allowed to talk to classmates for much of elementary and middle school!

DONNA WILLIAMS:
Ah, face value… well for me, that means how much is my face worth… of course… but then I say, now stop Donna, that’s one of those ‘special meaning’ sentences, what ELSE does it mean… and then I say… it means ‘to take something to be what its presented as’, ‘to trust’.

I’m still very literal, yes… like ‘what’s new’ I’d take very literally, ‘what’s up’… I know that means ‘what’s wrong’

STEPHEN HINKLE:
What was your experience with audience interaction such as knowing when to clap, laugh, etc in relation to what is on stage at a lecture, concert, play, or other large group or performing arts type setting? When I was a kid, I didn’t understand WHEN I should start clapping. It came so out of the blue. I struggled with how the others in the audience knew to start clapping and I didn’t and which actions on stage TRIGGERED a clapping response.

DONNA WILLIAMS:
oh audiences… that freaked me out. I loved to sing at the traffic, and I learned in ballet that people clapped… it sounded like rain, I understood it was supposedly a good thing, I saw it as a habit they had, some agreed habit they felt they should do, or that polite people do. When I became a public speaker I asked people please not to applaud. Because the sound was like rain, but at a time I felt so sensorily heightened my body was electric because of Exposure Anxiety, and people were GREAT, they just stood, in silence, and I walked out of there feeling they WERE my people, I WAS in the right world… it was beautiful… this was 1994. Later people told me they had to applaud because they were happy and excited and explained it was like me needing to do art… so I’d say ‘ok you can all clap now’… but now I just leave them to it. I don’t know what to do with their clapping, but I understand it is ‘a compliment’. I’d of course prefer something more useful! These days I certainly don’t know when to clap if I’m in an audience…. so when in Rome… in other words I just try and follow suit if I can.

STEPHEN HINKLE:
Did you have any struggles with not knowing the situation specific etiquette rules of different social environments such as playgrounds, parks, parties, performing arts, malls, bowling alleys, school clubs, stadiums, sports settings, amusement parks, museums, stores, the cafeteria, restaurants, etc? Did people have to directly teach you any of this.

DONNA WILLIAMS:
Oh Stephen, me in public spaces was like Tarzan in The Legend of Greystoke. Have you not read Nobody Nowhere and Somebody Somewhere? My father used to introduce me as ‘That’s Polly, she’s feral’ and as an adult I was not too different… I was very schizotypal and a buzz junkie so sensorily everything could become a toy or a playground and being object blind, context blind, face blind, you can imagine things often descended into ARTism.

STEPHEN HINKLE:
I used to turn lights on and off too. There were so many games I did not know as well. I wondered where the other kids knew them and I didn’t. I was curious, where you the kid who was chosen last on the playground in elementary school?

DONNA WILLIAMS:
Was the last kid in the playground chosen in primary…. yes. In sports kids groaned when I was put into their team (because nobody would pick me). Re friends, it was thin pickings, usually kids who spoke no English, were new at the school and hadn’t made friends yet, other abused kids who kids from ‘good families’ avoided… that sort of thing… but the ones I actually feared more than the bullies… and yes I had a few of those too, was actually the ‘charitable kids’… they would include me because it was ‘the right thing to do’ but I could FEEL they didn’t actually get me, didn’t actually like or want me or just as a mascot, a narcissistic object, and THIS hurt my self esteem more than bullies, so I’d drift off pretty fast, prefer to be alone, up a tree or playing with a stick on the fence.

My mother was huge on trying to get me friends… from sending me to school with swap cards (the other kids would pretty much insist on taking two of mine for one of theirs), to every day with hot chips (the other kids would sit with me and take one, then another….) to showing up in my father’s convertible (kids would flock to the car and my mother would put the windows and roof up and down and she’d tell them we had a pool and invite them over… nobody came), to kids who found we had a pool so would come over for that and my mother would encourage them with icecream… it was really pretty sad, but she tried her butt off in that dept… another strategy was she’d bully me emotionally with taunts of ‘look at her, see she’s got NO friends’, so I would rebel against that and at least allow kids to hang around me. But I did come to enjoy a few of my cousins, and now and then I’d like this kid or that kid. Mostly though I was friends with TV shows, with the record player, with the typewriter, with my objects, and especially with the mirror as I thought my reflection was another girl.

STEPHEN HINKLE:
In the upper grades, what was your social life like when you were a teenager? Did you understand all the dating, clubs, and other activities of high school?

DONNA WILLIAMS:
Oh Stephen, dating… I was raped at age 12, then again at 14, then was homeless by 15 and had to live with men to stay off the streets… no such choices in my world, not until I was in my 20s. Clubs? no, I was working from age 15… 30 jobs in 3 years, then returned to education. So first club I was in…. hmmm…. I guess one I started myself, a women’s group and a writer’s group, in my 40s. Activities of high school? avoiding bullies, being in fights (I became a good fighter!), taking myself on excursions into the community, most teachers couldn’t cope with me, by my 3rd high school (year 9) most teachers wouldn’t have me in their classes so I was babysat in the co-ordinators office.

STEPHEN HINKLE:
That sounds horrible.
Though it still seems like you and I have a lot of similarities in the social realm.

DONNA WILLIAMS:
I agree… as you can see I started more in the Kanners end of the spectrum, but from late childhood and especially from my teens, 20s and ongoing into my later years, my issues had a lot more overlap with Aspie realities.

STEPHEN HINKLE:
One last question, what kind of therapy did you recieve for social skills? I am convinced that the people teaching social skills need to be trained as etiquette experts and not just Speech pathologists, and be familiar with the recreational and leisure activities of the age they are working with. whats your thoughts on this? All they did for this was word games in the speech room, which doesn’t teach any of the social activities.

DONNA WILLIAMS:
therapy? I got that at age 27 from Dr Lawrie Bartak. He was an educational psychologist. I was already diagnosed at age 2, but as a psychotic child because autism was infantile psychosis in the 1960s. Lawrie took an interest in me just after I wrote Nobody Nowhere but in the year before it was published. Our exchanges were like a meeting of two cultures, a pair of translators, its in Somebody Somewhere. I think you’d find it pretty wild.

I think drama skills games are a great way to practice all kinds of social skills, ironically without being expected to ‘put on an act’. I also think that peer groups are essential so one doesn’t feel ‘worked on’, the peers (and I mean autism friendly ones) can be great models and through identifying with peers we at least give a damn about trying to learn social skills. But its also about learning self advocacy. So, sure, I now have ‘enough’ social skills to get by, but I have so many challenges too that skills in self advocacy fills that gap and is equally essential.

Donna Williams is an Australian born adult with autism who was assessed as psychotic at the age of 2 in 1965, labelled disturbed in the 1970s and diagnosed as autistic in her 20s in 1991.

She acquired functional speech in late childhood and went on to become a qualified teacher with an honors degree in Sociology and a degree in Linguistics. She is the author of two international bestselling autobiographies and has 10 published books including 4 text books widely used in autism education and two books of poetry and prose.

As a screenwriter, she wrote the screenplay to “Nobody Nowhere“, the first book in her 4 book autobiographical series. That screenplay is currently under option to become a Hollywood film. She is an professional artist, singer-songwriter and published poet as well as a world renowned public speaker on autism now living with her husband in Australia. In her presentations she draws not only on her own experiences but on international experience as a professional autism consultant since 1996.

Donna’s is a speaker in demand around the world due to her unique perspective and ability to share her feelings and experiences on a very personal level. More information about her and her life’s work can be found on her website at http://www.donnawilliams.net .